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Thursday, July 14, 2011

Thursday July 14th, 2011

I know it is not a clinic day, but I just wanted to vent. Ella did have a doctors appointment today, for Kindergarten.
First, this appointment was hard because the last time we were in this office, the doctor handed me a script for Ella to be tested to "Rule out Leukemia".  This was the first time anyone had actually said what was being tip-toed around for almost 3 weeks of testing. This visit brought up a lot of feelings. Ella's one year anniversary of being diagnosed is next month. I am not sure if I feel like celebrating or locking myself in a room and crying. If I do lock myself in a room, good chance I'll either be holding on to Ella, drinking a glass of wine, or just crying and waiting for the day to pass.

We had the very first appointment of the day. I did this to ensure that we would not be sitting in a very full waiting room that  is full of sick kids. Somehow with us having the first appointment and knowing the doctor walked in right before us, we still waiting over 25 minutes for him to come into the room.  Now, I have friends that are doctors and I spend a good deal of time around the medical field, but why some doctors feel there time is worth more than their patients is a mystery to me. I hoped it was something pressing that was keeping him, but I could hear his conversation on the other side of the door. Luckily, Ella and I are use to making time pass in small rooms. This visit did make me more grateful for her team at Loyola.

We went through the usual, stick out your tongue, let me look into your eyes, press on your belly.  Considering her drug regimen for the past year -she grew and was in the 75% for height, eyes look good, weight is okay too. The thing that was frustrating was that I had to fill out a standard TB (Tuberculosis) questionnaire.  One of the questions was is your child around someone who is going through chemo. My first thought was to Ella's friends. I had no idea that her being in chemo could in anyway affect their health.  Second, I didn't realize that chemo would make her more susceptible to TB(specifically). So I answered yes. The doctor then informed me that Ella would need a TB test and that he still wanted to give her the polio vaccine. Now, before Ella was diagnosed, I took every word my doctors said to heart. I questioned nothing, always assuming that they had the education and the knowledge that I did not. Now, I question, not only to make sure I understand, but to make sure that she stays safe. I told him that I was uncomfortable with this because her oncologist said "No Vaccines". He said that was only "Live" vaccines.  I told him that I still was not comfortable with it because if her ANC was low or her counts were off, the TB test wouldn't heal right anyway. Finally he agreed to call her Oncologist and verify "to make me feel better".  I love Ella's team. They answered the call right away, and guess what? No vaccines for Ella. I guess I was just frustrated that he was more concerned with what she "might" get, than what she DOES have.

On a brighter note, the Charles Tillman Foundation is holding a lunch in Chicago this Sunday for mothers of critically ill children(, and I have been invited. I am looking forward to meeting other mom's who are walking down this path too. Maybe they can help me mentally get through Ella's one year anniversary.


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